My birthday wish

My birthday is on Monday but I don’t think it’s too early to have a wish…

To my sweet little man. I say that with a tear in my eye as your 6th birthday approaches on Tuesday. It can’t possibly be true that 6 years have passed that you came into this world, and almost left us all in the same day. And it can’t be 6 years already that you almost lost me as well. But we Scorpio’s are tough Peanut. We are tough, strong, and to the dismay of a lot of people, stubborn. And that stubbornness gets us through the tough times. And it has gotten you through 6 years of your life.

So on Monday, though I know it’s not good luck to say your wish out loud, my birthday wish is this:

~ may you continue to be strong and hold your head high.

~ may you continue to show people that there is nothing wrong with being different.

~ may you continue to teach me and all of us to appreciate each and every day and each and every moment.

~ may you continue to teach me and everyone else around you to love the little things and life. Stop and smell the roses isn’t just a phrase for you. I have learned to appreciate these little moments so much more since I have to describe them all to you since you can’t see them for yourself.

~ may you know that no matter what, I love you more than I could ever tell you or show you. I may get upset sometime but it’s because I am still angry that this happened to you. You should be able to get excited about having a birthday party, you should get excited about having a play date, you should get excited about going trick or treating, and you should get excited about the magic of Christmas. And it makes me so sad that you aren’t. You were robbed of these childhood rights of passage for some reason.

But I am so proud of you and so honored to be your mother. I know I don’t slow down to appreciate things as much as you want me to. But I am working on it. Together, you, me, Daddy, and the rest of us will slow down and appreciate everything around us. We are still learning and still trying our hardest to do our very best by you. So please be patient. We will get there.

So for you my baby, and I only have 3 more days to really call you that, on Monday my birthday wish to you for your birthday, is to keep being who you are. You are the strongest, bravest, most amazing person I have ever met. I am honored to be your Mumma. I want you to keep proving everyone wrong. And even if you don’t accomplish all that I hope you will, because again Scorpios are stubborn and DON’T give up, I am so proud of you and how far you have come. I love you handsome. I can’t believe I am saying this already but Happy 6th Birthday. All my love.

Mumma.

 

Tyler at 4 months old with his “Mommy’s Little Tiger” overalls. I thought those were quite fitting for him as I call him my tiger. I still have these tucked away in my clothes bin and get to see them twice a year when I change out my clothes for the change of seasons.

 

Almost a bad day…

But not with Tyler. With the most important thing to start my day.

 

 

Yesterday I had trouble pushing the on button to get the wonder pot of coffee under way. I thought it was a fluke but was happy once it got going. This morning, I poured the water in, measured out the grinds, closed the lid and hit on. And hit on again. And hit on again. I repeated this step a half a dozen times. I was ready to cry. I must have a cup of nice warm coffee to get me going. This could not be happening I thought. Not on a day when I didn’t have time to stop for a cup on my way into work. So, I thought of plan B. I grabbed a knife and pressed the button. And viola, the air was filled with fresh brewed coffee. All was right in my world. And the best part is, I get to go shopping tonight for a new coffee maker. Stay tuned to see what I get

I’m Back

I cannot believe that 3 months since I last wrote. Where has the time gone???? Let me give a quick recap of all that has taken place.

School started in September and much to our hesitancy, it has gone terrific! He absolutely LOVES to go to school. He is so happy and so excited when I pull into the driveway. He is so bored ont he weekends with us, which makes me sad but happy at the same time. I am so glad he adjusted so nicely to the new surroundings. He is in the same school but now spends most of his time with strictly the special needs kids. This is where we were concerned but the change in him is so dramatic. I think he was actually overstimulated with the typical kids. The kids now, granted a lot cannot talk to him as they are non verbal,s till touch him and play with him and interact with him. There are 12 kids in the class and each child has a 1 on 1 aide. It’s so great. He is doing art projects now, and sitting for stories, he makes weather charts, he really is excelling in his therapies. I cannot talk enough about it.

Of course on the flip side is the struggles that we still have. Very little communication coming home so we know what he did during the day. We were only finding things out when we went to pick him up. So those issues just never seem to go away. And we STILL have issue with ST. She is supposed to see him 3 times a week for 30 minutes each session. She decided to piggy back on his OT time which is unacceptable. She claimed she didn’t have any other time in her schedule.

Next Friday, the 13th how ironic, is his IEP. We are calling her out that she needs her own time with him. His aide, lead teacher and our communication’s coordinator all agree. And I have it in an email that they agree so if someone says otherwise next week, I have proof of them agreeing with me.

But despite that, we are so happy and relieved to have him in the program that he is in. You can’t imagine the stress I had every day dropping him off. I would get sick to my stomach because of the tantrum he would throw. It pained me to leave him. But now, we sing, we laugh, he pushes me away when he is ready (which is fine as I know he is so happy). And his smile that he has when I leave just makes the whole morning happy!

Healthwise, he has been ok. He has suffered from a few colds since the start of school but nothing super serious. unfortunately yesterday it was announced that swine flu is in the building and I think particularly his class. When you have a room full of children sneezing and coughing and don’t understand at all to cover their mouths and noses, its bound to happen. So I am scrubbing everything daily and making him change his clothes as soon as he comes home. My parents are doing this as well. He cannot get the H1N1 shot due to his egg allergy. The shot is made with an egg base, similar to the regular flu shot, and he can’t get that. Not that we are able to get either shots right now with the shortages here. My mother, who is an RN, cannot even get it and she was supposed to. They only have enough to give to pregnant RN’s. She explained how she takes care of a high risk child and that still didn’t qualify her. It’s pretty scary. I am holding my breath but I don’t think we are going to escape it.

Other than that, things are ok. No major accomplishments but no major set backs. All is right in the Brunetti house.

BBS (Bad Blogger Syndrome)

I’ve done it again, neglected the blog. But I have a good excuse. The good weather FINALLY appeared here in Massachusetts a couple weeks ago and we have been enjoying it as much as we can. Many of you might not know but the New England area had a MISERABLE June. 27 out of the 30 days it rained. Temps were WAY below normal. It was horrible. And the first couple weeks of July were so so. Needless to say, soaking up the sun and fresh air has been priority!

 Last week, we headed up to New Hampshire for the annual family vacation. Unfortunately this year, we were minus my husband since he started his new job last week. We greatly missed him but that was certainly more important for him to be at the first week of his new job!

On the Tyler front, things are status quo, which isn’t necessarily a bad thing. He is doing well at summer school so I am anxious to see how he does in the fall. It’s so hard to believe that he will be starting Kindergarten in 3 weeks! Where is the time going????  Some of the children that will be in his new separated classroom are in the summer program with him and are taking a liking to him. One boy in particular, who the teachers have said is usually quite uncooperative, is extremely cooperative now that Tyler is there. He comes over, smiles at him and bangs on Tyler’s stander (as that is where Tyler immediately goes when he gets into the classroom). The teachers are amazed and impressed at this bond that is forming. This other boy has Downs and I think he is non-verbal like Tyler. At least I haven’t heard him speak 1 word in the 4 weeks we have been there so that is why I am making this assumption. So whether these 2 are speaking to one another in their own way or what, I don’t know. But if they can help each other excel during the year, what a blessing!

I promise to post some pictures of our vacation last week. I actually haven’t even downloaded them from the camera yet!

Calling all Buckeye Fans

As you know, I have dove into the Longaberger business. WELL, in preperation for the upcoming football season, Longaberger has created a line of Team Spirit baskets. There are over 21 different colors to choose from. Longaberger is reaching out to colleges and the NFL to see if they will partner up to have their logo etched on the basket lids. And the first to commit is the Ohio State University. If you or anyone you know is a Buckeye fan (and I know there are MANY out there) these baskets will sure to make you tailgaiting parties a hit!! Please visit my site for more details or shoot me an email and I will be happy to answer any questions or assist with an order for you.

Has me WRAPPED!

About a month ago, I wrote how Tyler had given me a couple hugs during a bad day I was having. Well, it gets better!

I have a part time job at Bath and Body Works. I have for the last 8.5 years. I just can’t break away from there. Well last night I had to work as they were changing the floor around. When I work a Sunday night, I usually arrive home well after Tyler has been asleep. Last night I was fortunate enough to come home early and he was still awake in his bed. I promised when I left I would give him a kiss when I came home. Well, I kept my end of the bargain up. I went in, saw his smiling little face and promptly gave him a kiss on the cheek. I look down and he is signing for me to pick him up. I told him it wasn’t time and that he had to go night-nights (he started summer school this morning and I knew it was late). I then gave him another kiss on the cheek only to have him sign again he wanted me to pick him up, this time he was starting to sit up. So I did as he asked, as we are supposed to do that so he learns his signs, and what does he do…….. gives me a BIG HUG, then leans over and signed “more” in the direction of his bed. I laid him down and he was asleep within 5 minutes.

He has me right where he wants me…..and I love being there!!!!!!

Prayers Have Been Answered

After 5 long months, Tony received the call he has been waiting to hear “we would like to extend you an offer for employment!” He is thrilled. He starts back into the working world on July 13th. The drive is a bit longer than what he was doing before, but like we said its a job. And his hours should be 7 – 3:30 so he will miss the traffic on both directions AND be home in time for supper with Tyler. It is so nice to have my happy, joyful husband back. I know this time has been extremely frustrating and I do not blame him one bit for feeling the way he has. So now he has 3 weeks to enjoy being home, enjoy playing with Tyler, and just relax. Thank you everyone for sending thoughts and prayers that he would find something. Someone was certainly listening

My Preschool Graduate

It is with mixed emotions that I post this blog today. Yesterday my baby graduated preschool! 2.5 years ago we were scared to death putting him in the public school. We had so many fears: would he be able to nap, will they know what he wants, will children play with him, will adults accept him for who he is, will he be snuggled if he cries, will he learn things like communication and motor skills, will be be accepted? Well we can whole heartidly answer “YES” to all of those questions. We couldn’t have been more fortunate to have found this teacher and this school system. Granted, we have had a number of disagreements but all in all, it has been a wonderful experience.

And now I sit here facing the same anxiety for the upcoming school year. Tyler will be secluded as mainstream Kindergarten just isn’t what he needs or will excel in. So now my fears are, will he realize he is alone, will he have the opportunity to play with typical peers, will he continue to grow and learn, will he still be accepted for who he is, will he resent us for not mixing him in with typical kids, is this the right program or should we be exploring other options? These are all things that I will have to stew over until he starts this program and we see how he handles it. Until then, I am glowing in the fact that my baby graduated preschool. My baby who wasn’t supposed to talk, walk, eat, roll over, survive really, has a diploma hanging on his wall. My baby has proved so many people wrong and continues to do so. My baby, walked to “Pomp and Circumstance” to receive his diploma. My baby is heading into Kindergarten. Where in the world has time gone?? I couldn’t be any more proud than I am today!

Before heading to school

Performance

Marching to "Pomp and Circumstance"

Receiving his diploma

Proud Mumma

Total Ignorance

As mentioned, Tyler was started on an anti-seizure medicine, Trileptal, 2 weeks ago. After the first week we noticed a definite interruption of his sleep during the night and also some issues with going to the bathroom. I read all the side effects, including on line where there were personal testimonies and these 2 are side effects experienced by many people on this medication. So I called the doctor on Monday. His nurse was out but asked for a full detailed message, of which I gave her.

Yesterday I receive the return phone call from the nurse. I am fully expecting to be sent in for blood work as this medication can lower sodium levels. She says to me that she wasn’t familiar with either the interrupted sleep or the digestive issues being side effects but she did say that wasn’t to say they weren’t. She continues to say it sounded more like an intestinal bug and that we should call the pediatrician rather than the neurologist. Hope your all seated as this is the best part of the conversation:

Nurse: ” As for the interrupted sleep, you should keep him on his normal routine no naps and lots of exercise.”

Me: “Well naps are part of his routine. He doesn’t take them daily but he does take them when he is tired.”

Nurse: “What 5 year old takes a nap? That is only asking for behavioral issues. Have him ride his bike or run around, with a buddy of course to make sure he doesn’t get hurt.”

ME: “If I could have him do those things I would but you see he doesn’t walk, let alone run so that will make it difficult.”

Nurse: “Oh. Call your pediatrician for the virus and I will ask the on call doctor if she has heard of these 2 things being side effects. If she thinks differently, I will call you but please call back with the recommendation from the pediatrician.”

ME: “Sure” with a COMPLETE hint of sarcasm in my voice.

Ok, so this is the first time I have spoken with the nurse, since we just switched to this neurologist in May. BUT, shouldn’t she scan his chart quickly before calling back?? She claimed to have had it in front of her and that she was reading the doctors note. Well if she read the first paragraph of the doctor’s note, she would have had his FULL description of his medical history including the fact that he is non verbal, non ambulatory, legally blind, etc etc.

I just can’t believe that was the converstation I had yesterday. I still can’t wrap my mind around this. So in 3 months, I have encountered 2 bothersome situations from one of the best hospitals in the country. Not making me very happy AT ALL!

Last night was no different with Tyler tossing and turning around 4AM. So this morning as he happily ate his english muffin, I said he needed to ride his bike more today so he along with Mumma could get a full nights sleep…too which he laughed and gave me a big smile that always melts my heart! If only his smile could make everything right!

The Perfect Therapy

DesiComments.com | Hugs | Forward this Picture

I couldn’t have put this ANY better! Yesterday I was not having a good day. I woke up grouchy which I TOTALLY hate doing. And a couple times yesterday while carrying Tyler and once when I was snuggling with him, he gave me a hug. He really squeezed me! It was like he knew. So I of course gave him a hug back which in turn lead to another hug. He likes deep pressure so hugs are perfect therapy for him…and a sad Mumma